Mother's Day- or Junk Genetics and the Agony of the Wait.

I have been thinking a lot, lately, about motherhood- about parenthood I guess.  And here's the thing- mothering, parenting... it's hard.  It is the hardest thing you'll do for a while.  It is the one of the most wonderful and cruel and graceful and graceless seasons of your life that you can and cannot even begin to imagine.  It is not necessarily intuitive nor is it something you ease into.  It is full of love and laughter and indignities and so very many tears.  Tears from you, tears from your baby (or babies).  So very very many tears.  Happy, sad, snotty, sloppy, silent, grieving, giggling tears.  

Tears for years.  

And it seems inevitable (although not often discussed) that there are things you love and things you hate about it.  I hate spit.  I hate drool, spit, all the liquidy goo that is literally entrenched in infancy.  Cannot stand it, cannot handle it- I hate drool.  I can manage all the other yuck- but the drool kneecaps me every time.  Otherwise I love too much else to individually catalogue here.  I will say that I do love motherhood- even at its absolute worst, I love it.  More than I ever thought I could, actually.  I genuinely enjoy the person I am helping to raise.  

Oh yes, most of all I love my kid.

E and I on holiday, a few weeks before the blood draw.

I beyond love my kid. 

So buckle in.

When my son was 18 months old I drove him to the genetics lab at the Moffitt Cancer Center.  My husband, who had had some treatment or another that morning, was already there and met us.  What followed were the worst moments of my motherhood to date.  

We had just found out that my husband carried a mutation on his TP53 gene.  TP53 is supposed to function as a tumor suppressor.  It is supposed to regulate out of control cell growth and division (go ahead and Google cancer right here).  It is supposed to work.  It is supposed to protect our bodies from ourselves.  

In my husband it does none of these things.  

In my husband it has malfunctioned.  In my husband it has lead to something called Li-Fraumeni Syndrome.  The mutation and named syndrome basically mean that carriers have an increased chance of getting all manner of (particularly nasty) cancers at a much earlier age than normal.  If there were a textbook example of this, my husband would be it.  In his thirties he was diagnosed with, underwent surgery for, and eventually survived anaplastic astrocytoma.  This is one of those particularly nasty ones.  This is brain cancer.  He still goes yearly for MRIs and will never not take anti-seizure medication.  

Mid-pandemic, he was diagnosed with "aggressive" (we were never given a "stage") prostate cancer.  He was 49.  Nasty little bugger again- and very much on the young side of prostate issues.  We- he really- fought it and beat back the big C.  It was during this time that he entered a clinical trial at Moffitt.  One thing led to another... and we found out about the mutation.  That horrid, wretched mutation.  Which on its own is its own thing, but which is also autosomal dominant heritable.  Just fancy bio-terminology for 50-50.  

Because my husband has this mutation, there is a 50-50 chance that he passed the same mutation to our son.  The same mutation, the same syndrome, the same mind-numbing, heart-shattering increased odds of all cancers- even childhood, even the worst. 

It still makes me nauseous.  I can only imagine the weight of it that my husband carries. 

So one over-bright morning, we met at that genetics research building and listened for our son's name.  Then we sat in the lab and tried to stay calm as the nurses tried to find a vein in our son's arm (he was a little dehydrated).  Then we smiled as the nurses cooed over our child (he is disproportionately cute- as in, it makes no sense how my husband and I managed to produce such a gorgeous kid.  Like, no sense at all) and complimented us on his bravery.  Then we were discharged with a folder full of information we did not want and began the wait.  

My wild boy.
My great love.

Cue those worst moments.  The breath-stealing moments of trying to guess at genetics.  The raging, wrathful moments when I blamed my husband's junky genetics for a disease our child may or may not have -and diseases he may or may not get.  The crying-in-the-shower moments when I simply could not think of a future in which my beautiful, vibrant little boy might be given the most terrible sort of news.  The out-of-my-mind moments when I sat there filtering through decisions that we might have to make, steps we someday might have to take.  Some decisions you might agree with, some you might not.  

These are the moments that made up motherhood for two-and-a-half weeks in the fall of 2021.*

There is nothing on this planet so humbling than waiting.  Nothing.  Not one single thing can possibly induce the kind of impotence that accompanies an interminable wait.  Nothing that cuts to the core of you and dictates the madness and pain of it all. 

My son does not have the mutation.  There are those joyful tears again.  By some cosmic miracle, he has two normally functioning copies of the gene.  He is now three and some months.  He is wild and funny, smart as a whip and thoughtful and imaginative and interested in dragons, ice cream, and books books books.  He tells me that I am his best mommy and I melt into a puddle.  Every day is long and some days are hard but most days are Mother's Days around here. 

Oh- and my husband is now fighting cancer... again. 

F*ing genetics. 

*I know that this is a drop in the ocean for a lot of other mothers out there.  To you I send all of my love, faith, and belief in your strength as a mother, a woman, a human.  To you I tip my hat every minute of every day.